Today I got to see the “echo” of my son’s heart. An echo (echocardiogram) is like an ultrasound of the heart. The purpose is to get a baseline of Adam’s ticker so they can monitor for any unwanted side effects during the next round of chemo we go through (in October). The echo shows these things: a measure the size of the heart chambers, pumping function, valve function, circulation, and fluid in the pericardium (the sac that surrounds the heart). Of course, the echo set off a realization I need to write about.
As I was watching the sonogrammer (technically an “echocardiographer” – one of the few healthcare jobs that is growing due to our aging population and prevalence of heart disease), I felt like I was watching Adam grow up. Now, let me preface… He is my flesh and blood. When he is in pain, I am in pain. If there were any trades in life, I would trade his disease for my health. But as I watched his heart pump, I realized that he is functioning on his own. His own independent body and organs, working in harmony, fighting to be well. While we are his advocate, recipient of all medical information and decisions, it is Adam who is doing all the hard work. I have been distracted on my own “hard” work. How hard it is to go to work, clean the house, put food on the table, care for two kids, and then take care of a child with special needs. But, hello! I LOVE my jobs. I love being a mom, wife, friend, etc. I love to teach. I love where we live. I also love to cook. I even get to play softball on Sunday nights. I am doing what I LOVE to do – and OF COURSE daily challenges come up. That’s life. Adam, on the other hand is doing all the fighting. His body is fighting to be well. Adam is fighting to do the things he loves to do, realizing he is different than kids his age, and trying to learn a new normal.
On Thursday I was feeling really defeated. I had a long day at school, Rachel was desperate for attention from Adam (good or bad attention – she doesn’t discriminate), and I picked up my car from the shop just to find out it was in worse condition than when it went in. The final straw was when I found out that I had been giving Adam the wrong dose of medicine for the last 5 days. I wasn’t giving him enough. I don’t know when exactly my brain decided to start giving him 1.75 instead of 2.25 of his pills, but it happened. I am more greatful that my brain threw up the red flags and I had the urge that something was not right. And the rush of “failure” swept in. I thought I was at least composed enough to call the doctor, but the hospital receptionist was pretty harsh when I asked to speak to someone in oncology. She said, “well, they’ve all gone home, do I need to page the doctor?” Well, um, I guess I don’t know. So she transfers me to the advice nurse. Yes, the general, my kid has a runny nose, advice nurse. So, I called back and demanded the doctor. Unfortunately, by the time the doctor came on the line, I was in an uncontrollable fit of tears. I am pretty sure I asked her if she was a therapist as well. She of course said, no, and did not think my “joke” was very funny (she doesn’t know me well enough to know that’s as funny as my jokes get). But as an un-confrontational person who just had to tell a service manager that he is responsible for letting me drive my kids in a car that sounds like it is going to blow up and is therefore responsible for fixing it, and then go through a receptionist with a pitchfork up her (you know what) just to get a doctor on the line, I was spent. Luckily though, the world is not ending, and I haven’t failed completely. Adam will be ok, and I am probably a stronger person from the whole situation… somehow…
Adam also had some more chemo today intravenously. It is really non-invasive with the metaport. He might feel some pressure, but it takes like 30 seconds to do. The waiting is actually the hard part. We have to check in with the doctor, which takes a while, especially because I always have a ton of questions. Today we met our official doctor. Apparently, our pediatrician has worked with her and their sons played baseball together. I am sure Dr. Ross must have arranged for this, right? Because our doctor team kicks butt. Praise the Lord for working that out! She also tells us that this behavior thing and crazy eating thing will be over in about two weeks.
On that note, here is our latest list of new recipes: banana bread, macaroni and cheese, philly-steak inspired hot links, homemade French bread, steak tacos, walnut pancakes, blueberry sauce, strawberry cookies, and 50-50 bar milkshakes. While Adam will probably lose the weight next month (because he starts a chemo that is an appetite suppressant and may make him nauseous), the rest of us are going to be 20 pounds heavier and, well, screwed. At least it’s been fun!
So, I have posted a couple pics of Adam right now. Think, chipmunk storing up for winter. Sooo cute! I was trying to get him to smile, you can see he was trying really hard not to. I finally tickled it out of him (and bribed him with popcorn).